anyone help me answer Dr please?

[D911]

I have posted periodically about my medication being amended by my Dr against my wishes. It has taken a month for them to reply to my email of complaint. Is there anyone who can assist me respond to this part of the email please?

‘We continue to disagree about the relative roles of TSH and T3/T4 levels in thyroid monitoring. Being on T3 does not automatically make your TSH undetectable. Hypothyroidism secondary to Hashimito's thyroiditis does not make your TSH undetectable in itself. T3 and T4 vary through the day and depend on when you took your thyroid tablets. T3 and T4 are the 'snapshot' thyroid markers, whereas TSH is a less volatile marker. T3 in particular, with a shorter half-life, wil vary greatly. The combination of the peak from the T3 tablet, and then a peak in T3 from the T4 tablet (which as you know converts into T3 in all but a few individuals), along with any residual thyroid function you have, makes it hard to interpret. We absolutely agree that the dosing, and TSH interpretation, should take symptoms into account, but for us this applies with a TSH that is at least detectable. We would, as outlined before, be happy for the TSH to be below the recommended range fi you felt better with it running lower (as long as it is detectable). Running an undetectable TSH si essentially making yourself artificially hyperthyroid, with the associated risks. Inote your comment about naturally occurring hyperthyroidism being more risky than overtreatment, lam not aware of any reliable research into this to date.

Neither the British Thyroid Association, the European Thyroid Association or the American Thyroid Association conclude there si any convincing evidence ni favour of using T3/T4 combination treatment at al (apart from those few who can't convert T4 to 3). We have continued to prescribe your T3 despite this, which to me demonstrates that we are trying to work with your wishes and symptoms for the management of your thyroid symptoms.

The consensus statement on the BTF website by Ahluwalia (Use of T3 in hypothyroidism, 2023) is a good summary of the current uncertainties ni the use of 3, and more generally of the issue of persistent symptoms despite thyroid treatment. The article on the NHS England website of August 2023 is also useful’

My TSH always reads <0.01 - has done for years - I take 20mcg of T3 and 125mcg of T4. The Dr reduced it to this as a result of this reading. I was on 20mcg of T3 and 150mcg of T4 where I felt ok. My FT3 and FT4 sit at around 70% when on 150mcg but she is not budging won’t put me back on the T4 where I feel most comfortable and I feel Like I have exhausted what to say back to her.

Could anyone help me word a response please

[Jaydee1507 Administrator]

Why is your GP meddling with your thyroid replacement dose?

Who initially prescribed the T3 and are you still seeing them as it should be that doctor who assesses your results and makes changes if necessary.

[D911 in reply to Jaydee1507]

She meddled because the TSH reading is undetectable and therefore thinks my meds need reducing. I paid privately to see an endo who added the T3 - I’m not in a financial position to revisit them.

[Jaydee1507 Administrator in reply to D911]

So who prescribes the T3 now?

This is an issue that comes up not infrequently and the answer is usually to go back to the T3 prescriber to get a letter to GP saying your results are OK. This worked for me although my TSH isn't fully supressed.

[D911 in reply to Jaydee1507]

My GP prescribes the T3 - they have referred me to NHS endo but won’t change me meds back in the meantime - I need to pen a response as to what she has written

[Jaydee1507 Administrator in reply to D911]

In a way your response will depend on what you aim to do next.

Reading what your GP is saying is that they would be OK with at least a detectable TSH but not a fully suppressed TSH which is something, but doesnt really help you.

Having been suppressed for years its likely to take many months, years, if it ever does budge from where it is now.

Most NHS Endo's won't accept a fully suppressed or even below range TSH so you're left with little choice other than to accept poorer health with a lower dose of Levo & T3 or move out of the NHS.

[D911 in reply to Jaydee1507]

Permission to cry…..

[Jaydee1507 Administrator in reply to D911]

I'm sorry. I wish it wasn't like this but here we are.

It looks to me like they've probably discussed this at a team meeting, done their homework and unlikely to budge from their current position.

You need to make your next move or at least decide what it will be.

[D911 in reply to Jaydee1507]

That’s what I am asking for help with as I am stumped

[Jaydee1507 Administrator in reply to D911]

I've given you a couple of options which I know aren't great at all but I can't make the decision for you.

[D911 in reply to Jaydee1507]

That wasn’t specifically aimed at you - I meant if anyone has any thoughts on what I can reply - you have been helpful and I’m grateful

[Sparklingsunshine in reply to D911]

What about changing over to self sourced T3. Its much cheaper to source it yourself than go by a private Endo, plus you get control over your doseage. The other alternative is to try Roseway Labs, they have a prescriber who is very good and she can prescribe T4, T3 and NDT.

It'll cost more than sourcing it yourself but it will be cheaper than a private Endo. I use Roseway for non thyroid meds so if you want more info try posting for advice on prices.

I'm afraid that Jaydee is correct in that the NHS are very unlikely to be happy with a suppressed TSH and even though yours, mine and many other people's are suppressed and likely to remain that way, it doesnt stop them meddling and decreasing your dose.

The NHS doesnt understand that a suppressed TSH can be very slow to normalise and some never do. No matter how often they reduce your dose.

[D911 in reply to Sparklingsunshine]

I simply can’t afford it - I have nothing left in my budget.